HYANNIS – Senator John McCain’s openness in sharing his journey with brain cancer and his final decision to end treatment highlights the importance and value of talking with family members about our final wishes before the end of our life.
“All too often we see different family members on different pages when it comes to deciding about continuing or stopping treatment,” said Donald A. Guadagnoli, MD, Cape Cod Healthcare chief medical officer.
“The family may want to us to do everything to save their mom or dad, but what may happen is they end up on a ventilator, can’t speak for themselves anymore and then begin to go down a path where eventually the family comes to the conclusion they won’t get any better. But now, you have to actually take away care and you may have to turn off a machine or remove a feeding tube you wished you hadn’t put in to begin with.”
It’s one of the reasons Cape Cod Healthcare and the VNA of Cape Cod & Islands have developed the Quality of Life/Care Planning Task Force to initiate the conversation and offer the tools to help Cape residents make good health care choices for themselves when it comes end-of-life decisions.
“My goal is that over 90 percent of people that come to our facilities will have advanced directives,” said Dr. Guadagnoli in a previous story, “End of life planning: The conversation continues.”
He recommends talking with family before a crisis arises and be clear what your intentions are for continuing or stopping treatment, especially in the event you are unable to make the decisions as time goes on.
Here are four tips for developing a plan for end-of-life decisions, according to Dr. Guadagnoli:
Start the conversation.
Dr. Guadagnoli encourages families to start talking with their children when they turn 18. Because, at that time, they should assign an agent on a proxy form. One reason is the topic becomes part of normal family conversations, especially when discussed over a holiday dinner. He and his wife had their initial conversation with their children over Easter dinner when their daughters were in their 20s. They all filled out healthcare proxies, talked about what they wanted and didn’t want for treatment and care.
“It was a very benign discussion because no one sitting at the table thought anyone else was going to have to worry about anything happening in the near future,” said Dr. Guadagnoli.
Be clear about what you want.
Give parameters about what you want to happen if you decide to end treatment or in the event you are unable to make medical decisions for yourself. Ask yourself things like would you want life-saving treatments such as CPR, to be put on life support (a ventilator) or to have a feeding tube for nourishment?
“Clarity is being clear about what you want at the end, whether you decide you want your physicians and hospital staff to pull out all the stops to treat you or if you’d rather not have any heroics,” said Dr. Guadagnoli.
Choose a healthcare proxy agent.
Talk with your family and decide on someone who will carry out your wishes and clearly understands what you want and don’t want.
Make sure other family members know your decisions about your medical care as well.
Talk about your religious views
This is an important conversation for many because often their perception of their religion’s view on continuing or ending treatment plays a role in their decision.
While facing the decision to end treatment can be difficult for all involved, the Cape Cod Visiting Nurse Association Hospice and Palliative Care offers services and support to help people through their transition from treatment to living out the rest of your life in the way you choose.
“Hospice is a philosophy of medical care, support, and guidance through the transition of ending curative treatments to living the rest of your days as comfortably and fully as possible,” said Sarah Endres, CHPCA, the Cape Cod Healthcare VNA Hospice director.
“Anytime a patient wants to focus on comfort and symptom management, it’s a good decision,” she said. “Choosing to not continue chemotherapy and radiation can often be the best decision patients make for themselves. We support patients in the most patient-centered, patient focused, and the most attentive way possible.”
She encourages patients, family members or medical staff to contact hospice with any questions, and suggests that informational home visits are also a great way to learn more about their services. There are also Cape Cod VNA Hospice and Palliative Care nurses at Cape Cod and Falmouth Hospitals who can meet with you anytime.
Further information and links to starting conversations about ending treatment, end-of-life decisions, and health care proxies are available on the Quality of Life Initiative of Cape Cod Facebook page.
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